Coronavirus FAQs

These are the answers to questions about COVID-19 posed by you. We will keep you up to date with any new information and advice as we get it.

Latest advice

People with pulmonary fibrosis are now to follow guidance for ‘clinically extremely vulnerable’ in England, Scotland, Northern Ireland and Wales.

Social gatherings of more than six people will be illegal in England from Monday 14th. Shielding advice for people across the UK has been 'paused', except if you are in an area of local lockdown.

Questions about the change? Watch trustees Wendy and Steve discuss FAQs from patients and their personal experience of lockdown.

Questions

If you suspect you have COVID-19

Speak with your ILD team first if you have symptoms of COVID-19.

Do not visit your specialist hospital or GP surgery.

If you are showing mild symptoms including a fever and cough, continue with your anti-fibrotics as prescribed and take paracetamol for your fever.

If your symptoms progress or you become increasingly breathless, call NHS 111 or visit the NHS 111 Coronavirus site.

Should I wear a face mask?

You’ll notice changing advice around the use of masks from the government. This is because research from their use in relation to covid-19 is still emerging and the government do not want to put a strain on PPE supplies intended for the NHS and care homes. Read the government’s latest guidance on face coverings.

At APF we are supportive of the use of face coverings. We strongly recommend wearing a face covering on public transport or when attending a hospital as a visitor or outpatient.

Remember that wearing a face covering is there to protect others and works best when social distancing too.

If you are unable to wear a facemask because it impacts your breathing, this is OK too. You can download the government’s exemption badges and printouts for use when out and about.

Read full guidance for:
‍Scotland | Wales | Northern Ireland | England

I haven’t heard about my next hospital appointment, what should I do?

It is vitally important that if you suspect or have a type of pulmonary fibrosis that you have regular check ups, including a lung function test. Many hospitals are working through a backlog of patients resulting from Covid-19 and reduced capacity because of stringent and necessary cleaning routines required between appointments.

No matter what your health is like we recommend you have your physical check up as soon as possible. Contact your ILD team by phone and email explaining your current health status and length of time since your last appointment.

What about my medical treatment?

All respiratory teams are starting to catch up with patients regarding their treatment plans. We encourage you to be proactive and get in touch with your team over the phone.

What changes after shielding is 'paused'?

From the 1st August the advice to shield will be ‘paused’ in some parts of the UK. This means if you have pulmonary fibrosis you’ll be advised to follow strict social distancing.

The advice is to stay at home where possible and if you do go out follow strict social distancing and hand hygiene but there will be no restrictions on where you can go or who you can meet
You’ll be able to go to work if you cannot work from home (if your place of work is COVID-19 safe)
The government recommend using ACAS for advice about returning to work (Call 0300 123 1100)

Food and medicine facilitated by the National Shielding Service will stop from 1st August. You are advised to:

Register with your local council for local support (eg for help picking up medicines)
Call 0808 196 3646 (8am – 8pm) or search for NHS Volunteer Responders to help with transport to a medical appointment, picking up medicines or supplies if you were shielding before 1st Aug.

What do I do if my local area goes in to lockdown?

If your area goes into lockdown because of a spike in coronavirus and you have previously been told to shield, you should:

stay at home as much as possible and keep visits outside to a minimum;
maintain strict social distancing and avoid gatherings of any size
if you wish to spend time outdoors this can be with members of your own household or, if you live alone, you may choose to spend time outdoors with one person from another household (ideally the same person each time)
you are advised not to be part of a support bubble with another household.

You may receive a text from your local NHS confirming this guidance.

How do I maintain social distancing?

We are aware that as lockdown lifts maintaining social distancing is becoming more complicated. We will continue to bring you personalised advice as information is updated from government. In the meantime we recommend:

Avoid crowds and crowded places (like supermarket queues and busy streets)
If you touch hard surfaces such as gates, railings or benches outside your home use hand sanitiser immediately afterwards
Maintain high hygiene standards, washing your hands frequently and avoid touching your face
Walk at quiet times and in quiet green spaces

Read updated government advice on social distancing.

Preventing others from infecting you

If you live with others, it’s hard to keep separate from them. But you will reduce your risk of getting COVID-19 if you:

Keep 2 metres (3 steps) away from other family members, sleep on your own and use separate towels and a separate bathroom, if possible
‍‍Keep shared spaces such as kitchens, bathrooms and sitting areas well-ventilated and minimise as much as possible the time other family members spend in these areas.‍
Clean any shared bathrooms every time they are used and try to use the kitchen at different times. Family cutlery and crockery should be washed well. Use a separate tea towel for the cutlery and crockery you use.‍
Get everybody in the house to wash their hands frequently (20 secs with soap), avoid touching their faces and clean frequently touched surfaces.

Note: Shielding is for your personal protection. It is your choice whether to follow the advice. Individuals who have less than six months to live or some others in special circumstances, could decide not to undertake shielding.

Protecting family or friends with pulmonary fibrosis

There are simple steps you can take to reduce the risk from COVID-19 for those you are caring for.

Only care that is essential should be provided.

Wash your hands when you arrive and often, using soap and water for at least 20 seconds or use hand sanitiser.

Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze.

Put used tissues in the bin immediately and wash your hands afterwards.

If you’re unwell, do not visit or provide care; make alternative arrangements for their care instead.

Provide information on who they should call if they feel unwell, how to use NHS 111 online coronavirus service and leave the number for NHS 111 prominently displayed.

Find out about different sources of support that could be used and accessing further advice on creating a contingency plan is available from Carers UK.

Look after your own well-being and physical health during this time. Further information on this is available.

Should I follow the new changes to shielding?

We know that while many of you will welcome the easing of restrictions, others will be more cautious. At APF we believe that being able to get outside into the fresh air, take exercise and meet more freely with loved ones is vital to our mental and physical well-being. But we would urge you to practice strict social distancing and continue to avoid busy public spaces where you might have less control keeping socially distanced from others.

We wish that we could be more definite with our advice about what you should or shouldn’t do but there is no magic answer. We understand it is a difficult decision and we would encourage you to look at all the evidence and information on the government website before deciding what you, personally, are happy with.

If you would like to speak to us about your concerns or any details of the advice please call our Support Line on 01223 785725 between 9am – 5pm.

Action for Pulmonary Fibrosis is here for you at this very challenging time.

Can we visit friends/family?

You can now meet family in a group of up to 6 people outdoors (this includes parks, gardens or backyards)

We recommend people with pulmonary fibrosis follow the guidelines maintaining social distancing at all times.

What about my oxygen supply?

There are no issues with the supply of oxygen. You may want to speak to your supplier for reassurance:

Air Liquide:

0808 143 9991 for London
0808 143 9992 for the north-west England
0808 143 9993 for east Midlands
0808 143 9999 for the south-west England

Baywater Healthcare covers Yorkshire and Humberside, westMidlands and Wales.

0800 373 580

BOC covers East and North-East England and Northern Ireland.

0800 136 603

Dolby Vivisol

0500 823 773 for the south of England.
0800 833 531 for Scotland

‍I'm feeling more breathless. Can I have an oxygen test?

Most hospitals are able to test do oxygen tests again. Waiting times for your test can be quite long so we recommend you book one as soon as possible.

Many hospitals have new safety measures so make sure you receive a letter confirming your appointment and what it is you are required to do or wear. If you are feeling more breathless than usual, we suggest you contact your ILD clinical nurse specialist and your GP.

Keep phoning until you have a response. There are many things you can do at home to help to improve breathlessness, such as using a handheld fan, breathing exercises and upper chest exercises. Read more on breathlessness.

Getting food, medicines and essential supplies

It is important to ask for help with the delivery of food, medicines and essential services and supplies, and for support with your physical and mental health and wellbeing.

Your local council or community group may be able to help with food and medicines.

Ask family, friends and neighbours to support you

Your usual support from health and social care organisations will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the Home care provision.

We are still shielding. Will my kids have to go to school?

No. Families who have someone at home who is considered extremely vulnerable, will be offered a choice as to whether you feel it is safe for your child to return to school or not.

Should I return to work?

The government has said people should return to work only if it is considered safe to do so. All guidance ultimately suggests to keep up regular contact with your employer. If your employer expects you to return to work and you feel that conflicts with shielding advice it is recommended you talk with your employer.

Advice on issues relating to returning to work is changing extremely quickly for all the nations. We recommend you regularly visit the following pages:

Guidance on shielding for people considered extremely vulnerable
Guidance on working safely
ACAS –the Advisory, Conciliation and Arbitration Service

I live with someone with PF should I return to work?

There is guidance on how to live with someone who is shielding.

We have lots of practical advice

The government has said only to return to work if it is safe to do so.

Your employer will be given advice on how to implement safety measures to keep staff safe.

What happens if I am admitted to hospital?

So far in the UK, it remains very rare for anyone with pulmonary fibrosis to be admitted to a COVID-19 ward.

We strongly recommend you complete our medical information form and make sure this is with you plus any recent letters from your ILD Teams if you are taken in to hospital. Do use the back of the form to add any additional information that you feel is helpful and specific to you.

It’s a good idea to think through what the first 12 or 24 hours might look like if you went to hospital. Questions to ask yourself or discuss with a loved one:

Once I know where I’m going to be admitted to, what will I need to take with me?
Who needs to know and how can I tell them?
Who can travel with me/take me?

We know that some people living with very advanced pulmonary fibrosis may choose to call their local hospice if they are already accessing support from the palliative care teams instead of 111. It’s a good idea to let family or friends know your wishes.

What about medications and the coronavirus?

There are no issues with the supply of drugs to fulfil prescriptions. The companies producing the two anti-fibrotic drugs have assured the European IPD Federation (EU-IPFF) and APF that supplies will continue uninterrupted.

Medications for other conditions should be requested in the usual way and will be sent to your nominated pharmacy. Expect at least 24h before collection / delivery because pharmacies are working under pressure.

What can I do to help others?

Contact your support group organiser and offer to call members of your support group to ‘check in’ and stay in touch
Share any skills you have to help others stay in touch with friends and family online
Encourage people to get online and follow APF on social media
Share your tips on how you are keeping busy, teach others a skill or share a joke

This page was originally published on 18 March 2020, and was last updated on 9 September 2020. This advice is updated as new information becomes available.